Here is to a Happy 2016!

Because this past year has been so epic, I am promising an entry per day to my blog. I have been busy writing the last two and a half years but not posting after somebody threatened to expose my identity [and my dad passed away, and JD and I are living together again... many things have happened]. Also, in 2015 the Colorado Revised Statues saw an overhaul of 24-34 Part 8 that made life for disabled persons (having disabilities aside from visual or hearing impairments) with service dogs SO MUCH EASIER!!! Oh, and that reminds me... I got a service dog!!  [See, many things have happened.]

In celebration I present you with 366 brand new entries which will cover: 

     · My classes [which I'm currently taking a hiatus from]

     · Alice 

     · Training my service dog Max 

     · ADA issues

     · Effects of the alteration of Autism criteria under DSM5

     · Random thoughts!
     · The new diet I'm trying... [help me!]

On the ride side of my blog you will see the calendar where I will link each day's post [as some will be published with past dates] making all my new entries easy to find. I am so excited for 2016!

The 3 year anniversary...

So it's been 3 years since I was fired from my job.  So much has happened since then and so many things are still happening but I wish to reflect on this day.

Working in a hostile environment is akin to being in boarding school, as I would imagine it.  There is so much going on in your life but just as every teacher acts as their class is your only class so does each conflict at work become 'the only thing' that is happening to you.  Problems with your personal relationship? Irrelevant because you have to deal with the depression from your work environment.  Having issues paying the bills because you have lost so much pay between suspensions and increased medical bills? Well, leave that behind because you have to deal with working through your symptoms and trying to meet this goal that is unattainable without your accommodation.  Basically all of your problems become moot because your teacher expects that the only problems you have are the ones they assigned.

Also, this too:

I notice many NT's around me seem to see the world as one either accepts fault or one is accusing others of fault. I see a similar idea expressed as "winning" means one person/side is happy/victorious while the other has clearly lost/been defeated.
At my ExWork it got to the point that; no matter how petty; nothing could reflect that I a) actually had ADA Rights, b) was/had been accomodated, or c) effectively completed any work-task.  This got rather ridiculous at several points, but it all came down to denying/bypassing/ignoring that I may have a) potentially been even slightly correct is the assertion of my rights or b) received any adjustment resulting from subsequent "battles" over employee/ADA/etc. rights/regulations/priveledges.
I see this when "talks" with JD [or others] oscillate between placing blame/fault/negative connotation/etc. on me or accusing me of lumping it upon them...
Seriously, I do not care if you want to re-write the rules of "winning" but, outside of a few well-defined arenas, "winning" happens when all sides are satisfied.  WWII was not "won" until nobody [including the Germans] was living under oppression.  One may "win" a hearing or "win" by subjecting another person/group to subpar conditions under their power/authority based solely upon the certainty that no one will do anything about it, but the bully has not actually won anything.  Also, the fact that grown people stoop to this posturing/attitude/behavior is just pathetic.  What did that person get?  Um, the humiliation and subjugation of another human being because that person is too stuborn/spiteful/self-important/prideful/arrogant/lacking-in-real-world-knowledge-or-intelligence to think clearly, make effective/good decisions, and/or treat people with respect/dignity.
Congratulations on being small and ignorant?  Hallmark does not make a card for that, how about a "Get Well Soon" instead.
Going back to a one-on-one argument, I do not understand why blame always/usually/often has to be placed on a particular person.  Yes, we ended up in this crappy situation and we are arguing and we have BOTH said/done things which were spiteful/immature/wrong/rude/hurtful/regretted but can we stop stacking blame like casino chips and actually just solve the [biggeldy-puck]ing problem?  We are miles away from it and too busy tip-toe-ing through the minefield of hurt and/or chucking warheads related to things which have nothing to do with the fact that this whole argument started due to a simple misunderstanding and has ended up being a multi-media event of every way one or both of us is a crappy person in the eyes of the other.
A disagreement is "won" when both sides are satisfied with the outcome and feel they have been treated fairly.
And as a contradiction to this [as many people see these ideas as conflicting] I am firmly in support of competition, sports, recognizing talent or a job well done, and the inevitable truth that some people do X better than others, some people appear insignificant in terms of abilities, and some people are inept at physical or mental challenges.  However, there is a healthier way to expose our youngsters to this - make teams of the kids who want to play ball but are not natural-born talents, encourage kids to try out for what they like, support the kid who wants to do X but needs extra support to be a productive teammate - without removing any reward.  Score teams, let there be a winner and a loser, but remember to mentor them on being good winners AND good losers, do not let bullying be an acceptable behavior, teach them to be respectful of themselves so they can be respectful of others...
There is dignity in every area, we all have strengths and weaknesses, we all have talents even if they are sometimes hard to identify, we all can contribute, but we may not all bring home the gold or be the hero or get the fame; this does not mean our lives lack purpose/meaning.

#ThisIsWhyWeCan'tHaveNiceThings

So I have been doing a lot of thinking and drafting and frustrated [metaphorical] tossing of paper into the bin.  I keep coming back to this one idea: The individual gets blamed for the sins of the [insert any larger entity here].
I have examples! Bare with me, this will not be easy. lol I will attempt not to rant.
A legal policy [tax/regulation/whatever] is meant to help/address X, the business/corporation/other governed group reacts by placing a negative consequence onto customers/employees/group of others/etc. and the VOTER gets the blame.
An employee is denied their rights/human dignity, and during the employee's attempts to have their rights honored, the employer penalizes other employees [removal of rights/priveledges, increased caseloads while trying to remove victim from employment, other alterations in the attitude/conditions of the workplace] and it is the victim who suffers the score and scrutiny of the office - often involving harassing conditions, hostile work environment, and out-right abuse but it is the VICTIM who gets the blame.
Child/Adult X is different and requires an alternate experience interacting with their world but is within a larger entity [school, business, care facility, etc.] that does not respect [or choose to even recognize an established difference] but it is the Child/Parent of Child / Adult/Caregiver who is ostricised and/or abused for the incompetance of the people in power/charge/etc.
I find this so frustrating because people complain about injustices yet appear blind to the injustices they commit.  I had to listen to a coworker [who created a hostile work environment for me] lament about her uncle being harassed at work for his medical problem.  Honestly, no idea how I kept my mouth shut.  She even adjusted how she addressed a coworker who is still there and was having a conflict with management over a medical issue but I was still unworthy of even the professionalism of civil, basic office interactions during the time I was still there.
I look at a world full of people who lie by omission with every simple yes-or-no answer, who bend their description/recollection of events to satisfy their adgenda, and who manipulate with wording and am absolutely flabbergasted at the fact that I [a paladin if ever there was one, I ask the cashier at the restraunt if I may take a toothpick/mint] am labeled a liar/manipulator by people who fail to know/understand/care-enough-to-be-bothered-with-the-fact that I work differently.  I do not perceive, describe, interact or engage with the world using the same filter as the majority of people out there.
If you take the time to give any biggeldy-pucks at all and actually get to know me, you would understand.
But that is the other thing: Once the larger group has written a person off, there is no social benefit to showing understanding/acceptance so [individuals within the larger group] just stop showing it.
Sheeple, this is how the holocost happened.  This is where genecide starts.  Did you not actually understand the lessons behind the history classes you were subjected to or did your history teacher(s) fail to point out the "behind-the-scenes" of the horrors of histoy?  Do you still think Columbus sailed to the United States, shook hands, and began a symbiotic and beneficial relationship with the Native Americans?
Sigh.

I am returning... and I intend to stay this time :)

However, I have learned that no matter how long I am gone from Twitter/the Internet/etc. there will always be something to write about when I return. lol

As my readers should know, I cringe anytime I hear the word "Autism" paired with anything ridiculously grandiose with a negative connotation [i.e. "Crisis"].

@BarackObama Address the current Autism Crisis! In light of the autism hearings, the time has come for answers! http://t.co/rN4MaXwv
— TannersDad Tim (@TannersDad) December 11, 2012

I do not wish to pick on @TannersDad as I both appreciate the other side of a debate and enjoy reading a different view.  I will admit that these words often frustrate me [as do many many more unrelated and mundane things - this is the nature of autism; low frustration tolerance] but I feel it is important to remember that there are different opinions expressed by people who are just as human as I am.  Also, if one assumes that their position is 100% right and everyone else is 100% wrong they show no grasp on the reality that truth is colored by perception, experience, and state of mind.*

Brace yourself; this is going to be a bumpy ride.

I digress, a little too late, but I do.  Actually, I am placing this part after the jump and continuing above, so unless you a psychic or you read after the jump, you have no idea I strayed so far off topic.  For you, thorough reader, I insert the following:

COMMUNICATION

No matter what, it always hurts...

You spend your life being alienated away from your family... always told that nothing you do is good enough, how you are the problem, how you makeup stuff and the fact that the family relationship is broken is all your fault so fix it...

How can my mother alienate me from my father's side of the family?  Why does no one stand up for me and everybody judge me based on the shit other people say?

I really do not need this right now.  I have been studying and working hard to get accepted into this program and I am trying to manage steps forward in my career and life paths while filing a lawsuit against my workplace because it is my only option but I also have to deal with the fact that I have no family support.  I am judged constantly and no one cares about how I feel or what has happened to me.

I feel like everybody always expected something else from me... always wanted me to be something else and could never see who I was.  I look into the autistic community and most of what you see is parents/family/others who want something else for their autistic children and are unable to appreciate what they have.  I realize that not all autistics are like me - I realize that some are unable to express themselves verbally or cope with the stimuli that must be faced in even the smoothest of days; but I also know that I cannot always do those things.  I have days where I would rather just not talk because whatever I say always makes it worse; when I know I cannot safely cope with driving but do not always have the option to avoid it; there are days that I do not want to do anything and there are days where I want to scratch the skin off my body and rip the hair out of my head and beat myself against the wall because the physical pain would be some mixture of what I deserve and how I know I am still alive.

I wish I did not empathize.  I wish I did not worry about how people saw me or how they felt or what would make them happy or help them. 

I know that the thing that happened probably was nothing, but I cannot help but see one little thing and freak out.  I am trying to get ahead, I am trying to move on, I am trying to pursue something I may be better at; but I feel that the people who should support me are just ignoring me.  The "community support" that people rely on for furtherance of careers and projects and themselves is severely lacking.

I am shouting down a hall void of life, air, warmth, matter.
I speak coherently but it surely must be a different language.

I feel like I exist in this world but I am not a part of it.  I am trapped to watch but never understand.  I will leave no lasting impression other than being the weird person who never fit in, could do no right, or only proffered lies and tricks.  The people who harassed, bullied, threatened, belittled, and dehumanized me will move ahead, be supported, promoted, and successful because that is how the world works.

I will never be recognized for what I am, what I do, what I am capable of; I will always be deficient, lacking, broken, sub-standard.  The outside will always want to change who I am, I will never be good enough.  I envy the ones who do not understand this fact.  I envy the ones whose ignorance signifies a small amount of bliss.  I envy those whose mental capabilities are lower as their intelligence will never intimidate and they may have the peace that comes with being oblivious to the workings of the world around them or their standing in the eyes of others.

In actuality, my pain changes nothing as no one listens.  Everyone wants a name for the scary monster under the bed.  Everyone wants a word to blame, something that can be targeted, aimed at, eventually destroyed.  It does not ever matter if the thought process is illogical or wrong or if they are missing something beautiful and unique.  It is the reason our super heroes become villains, why we hate, dismiss, discriminate against that which we do not understand.

It is why even the seemingly simple idea of equality founded our nation but also divides it repeatedly over the decades.

I need a hot chocolate, my pj's, and my rabbit.  Followed by a week of sleep, stimming, and being able to throw out the bird randomly when I have to relive all the shitty event which have lead to my biggeldy-pucked existence.

Retrospect on a Hiatus

So I have been away from social media for the past few weeks dealing with court and other personal matters.  I have been searching information on discrimination law suits and reading about outcomes and other fact-based information.  I have also been reading through the comments sections that are always found at the bottom of internet articles.

The internet is a wonderful place to share ideas, talk about what bothers us, and vent our frustrations.  The internet is also a dark place filled with ignorant ideas and snippets that may look good or sound snazzy but which one would not dare to let fall from their lips around their "In Real Life" acquaintances.  Or possibly a platform for us to listen to the outbursts from individuals who cause their own family and friends to shake their heads and offer apologetic looks when those outbursts have been expressed in their company.

I know that there are people out there who are greedy, misguided, ignorant, or looking for an "easy way out" and decide that claiming a disability and attempting a lawsuit is appropriate for them when their situation clearly dictates otherwise.  I know that this causes unfavorable opinions upon anybody who claims a disability and files a complaint or lawsuit.  I know that people say very ignorant things on the internet because that is why the internet exists.  While I am reading those ignorant things, my anger is usually placed on the people who attempt to scam the system.  My fear that this process will be fruitless has grown steadily larger and I wonder what I will do if my claims are not taken seriously.  My goal is not to receive a large sum of money, but to be able to go back to work, be successful in my career field, and not exist in a hostile and demeaning environment.

At the same time I wonder how I would ever be able to go back now, after years of being made the fool and earning the contempt of my coworkers.  Years of having managers who talk about me negatively with other employees, punish the employees who associate with me, and get other employees to lie about their experiences.  I look at how many of these cases are lost or deemed 'frivolous' and wonder how many of them have been fighting a stacked deck?  When you can take and employee who has previously messed up and given them a chance to redeem themselves by lying under oath or when you just do not have enough proof...  It is not as though any of the individuals who threaten or harass you are going to admit to it and whose word gets heeded?

Then at the end of the day you have the average tax payer who sees these law suits as a cost they ultimately pay and the payout as their hard-earned money.  I am not so naive that I do not understand that a business's expenses are paid by its consumers nor do I believe that legal fees and settlement money grow on trees.

I think the most frustrating part of this whole ordeal is that I do not want to sue, I do not want to go to court, I did not, initially, want or need money from my company...  I just wanted a simple, free, easy accommodation which was in line with the privileges afforded to my coworkers.  I wanted my demerits removed from my file and I wanted a good reference if I decided to go to a different firm.  That was never going to happen.  Who would hire an employee who was fired with a number of demerits?  How do I obtain employment on-par with my previous employment or in my career path?  I have monthly bills and an education to pay for... I am a good worker, smart, friendly, and kind.  However, I currently cannot get a job comparable to where I worked.  I have lost wages from that company for suspensions and other unpaid leave.  I have suffered and experienced pain from working there and dealing with the different things I bore while there.

I also have experienced lost wages since I cannot obtain comparable employment.

I get so frustrated because I have seen so many people who struggle under discrimination [or just under managers who are complete douche bags] but do not fight it either because they feel it is better not to [something I do not entirely disagree with] or because they tried and lost and are now even worse off.

It is hard to be where I am, it is hard to be suing an employer, but it is also hard to be that employee who suffers while everyone watches and makes their opinions.  Everyone seems to think that since management is not changing anything or supporting the employee that means that the employee is in the wrong and a problem.  It is easier to turn your back on one uncooperative employee than to try and understand or stand up for an individual who needs assistance.  I understand that there are worthless people who attempt to take advantage of the system, but I also know that there are good people who are kept from getting ahead or succeeding because managers are people too.  People are flawed and make mistakes.

When a company will not follow the law and chooses to degrade one individual till they are gone instead of spending far less time, effort, and money helping that one individual succeed, what in the world is that person supposed to do to put their life back together?

The whole situation is biggeldy-puck and so the answer is probably equally biggeldy-puck.  Does not make it right, but maybe it levels it out just a bit.  If someone is mad because they have to 'foot the bill' the target should not be the individual who is suing, but instead the company/manager who created the situation that resulted in a suit.

Updated Response [with 60% less anger!]

When I wrote this entry, I did not verify that the quote existed.  One of my Twitter Birdies provided me with the link to find that horrible comment [and, of course, I found that there were other comments just as awesome].

This is specifically in response to Sarah though there are other comments on this article which are misguided.  I found this comment on its own [and therefore without context] and I made me very angry.  When I was directed to the location of the quote, I was still angered by what was here but I also wanted to address this audience with more consideration than I exhibited in my personal rant/response.

I think it is important to consider how the words that are placed on sites like this actually make those of us who are autistic feel.  We have to work, play, cope, and exist in this world and the sensational language and responses [especially when they are negative] affect how we are perceived.  I think that sometimes the authors of such comments intend to say something powerful and encouraging but never stopped to consider the words that actually came out.

Let us re-read this one comment:

'Many children, mostly boys, in the US have autism. This has caused "collateral damage" to American children and means that this generation will have a shortage of people [without autism and able to do worthy work?] to do essential jobs that only NT's can accomplish' ... Like being engineers and scientists?

Sorry to inconvenience the rest of you: I was too busy 'giving my life away before the onslaught of autism [that I was too weak to fight] and now the rest of the country will parish' because me, and all my autistic brethren, went and got all diagnosed with an Autism Spectrum Disorder??

:/

Please consider that autism [including the broader spectrum] causes 'side effects' which also include interests in math and science, the ability to see pictures in our heads and evaluate structures, focus and perfectionism, logical problem-solving, and quick mental processing.  These strengths can help us to be wildly successful. [Personally, I can complete complex calculus equations but cannot chose which mustard to buy at the store.]  Please also consider that the DSM criteria for autism is being altered due to a better understanding of autism.

I hope you can read this response and just understand how insulting your comment is to Autistics.  Especially since: "The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70)" as of the 2008 published study.  These studies are based solely on the populations of children who are 8 years old at the time of the study.

A majority of us have IQ in the above-average to superior range.  A majority of us do not consider ourselves sick.  A majority of us find a lack of understanding and acceptance by those who feel pity for us or believe that they need to empathize with our lives.  No, not all of us [including myself] can speak [verbally] in an effective way, but that does not mean that we are less capable of felling or thinking or understanding.  We know what you think of us, especially when we are young and you are the adults in our lives.  And it does affect how we feel about ourselves and how we feel about you.

The Darker Side: Si vis pacem, para bellum

This particular blog post is highly negative and dark.  I express my thoughts on suicide [which include that it is illogical and solves nothing] and describe the horrible boughts of anxiety/panic that I have been experiencing lately.

I begin by talking about my high IQ and excellent memory and how my brain has developed a safety mechanism that protects me from my traumatic past.  However, this mechanism is not enough to spare me from the effects of what I went through for four years at my job.  This is where the negativity comes out to play.  

If you are prone to anxiety or have struggled with suicide, I do not recommend that you read the full entry.  If you still would like to read what is alluded to above, you have to click to read those parts.
 
Obviously I am not giving up and I am not fleeing town.  I started this blog to try and process what was going on with me as well as to learn more about my diagnosis.  An added benefit is that I get something to do that occupies my mind and gives me something else to focus on.  Unfortunately, I had to dwell on these things at the start of last week and then was unable to shake them.

JD has been at my house since Wednesday and I have been off work.  One thing I can say, JD has managed to be very supportive.  One of the issues we had was with his perception of what was going on at my work.  I guess the last two years have gone a long way toward allowing him to understand and accept.  I do not know if we will end up back as husband and wife, but I do know we will be okay as friends.  And that would be enough.



Preface:
A few months ago I read where autistic children who desired the social interaction but did not receive it tended to develop anxiety and/or depression [I believe the article cited both, but I know it cited anxiety].  I can see the truth in that, but I am fortunate that my anxiety stays confined to situations where I am being misunderstood but does not usually affect my daily life.  I am fortunate that I occasionally have a "depressed mood," or a period of mild depression, as opposed to suffering from clinical depression.  I am also fortunate that with my high IQ (130 + based on average of scores) and excellent memory, that my "bad" memories of negative experiences tend to get tagged and filed where they do not often get accessed but also are not forgotten.  It is a protection mechanism that I am grateful for; the negative memories are there [and if I go "looking" for them, I still get to relive them vividly] but I am allowed to maintain my "innocent" and naive personality trait and not hold a grudge.  An unfortunate side to that is since I do not hold a grudge, it took way too much before I was finally able to break ties with my mother, and other assorted family members.  A good counter to this is that, when it came to the shit I have been through at work, I was able to persevere and maintain at work without impulsively quitting [even when I wanted to] or telling anyone to fuck off.
 
In the end, that does not matter.  It does not matter that I have been nothing but open and honest.  It does not matter that I do not have an ulterior motive.  It does not matter that I do not have the motivation to manipulate people.  It does not matter that I can objectively look at a situation without having an emotional response that I need to overcome.  It does not matter as the only things that matter are the perceptions and choices of those who have control.  They perceive an ulterior motive, a manipulating quality, and a false claim of either my diagnosis or the affects of the autism.  An added part of the frustration is the fact that they have just ignored the rules.

I think part of the problem is ignorance regarding the autism spectrum and part of the problem is the motives of management.  At this point, regardless of what has happened, it may appear more beneficial to management to maintain their decisions and hope that I do not file in court [or that if I do, I do not win].

Point:
So the last week I have had a very hard time ignoring the frustration of my situation.  I was fired in May after almost five and a half years of employment.  Four years of that was filled with attempts to gain accommodations after the terms of my employment had been altered.  I have a large "folder" of memories stored up and recently had to start dealing with and sorting through those memories.  The memories are vivid, include feelings that are difficult to process, and create a state of endorphin-spiking, fight-or-flight, fear and anxiety-ridden panic.  I had to go through all these experiences and got to process them as a unit, as opposed to individual happenings.  It was clear to me that management was intent only on maintaining their denials of responsibility, claims of appropriate action, and eventual finding that I was an employee with poor work performance who needed to be fired.  Their decisions, actions, and in-actions alike have made my degree, passion, and desired career path null and void.

Now I am not a suicide candidate as it is illogical and accomplishes nothing but the other day I found myself envying individuals who could "opt-out" and never have to continue in their footsteps.  Aspects of what they have done and the position they have placed me into took away all of my hope.  I desire to have my life go back the way it used to be.  I desire a resolution.  However, I know that this is not possible and any naive hope I had kept alive for years is gone, crushed, taken.  I have reached the point where just thinking about the things that I have been through causes me to experience the following:

• my chest feels like it is being crushed
• my heart pounds 
• my brain feels like it is swelling and will explode if I do not stop the stress
• extreme [and possibly irrational] fear, anxiety, and panic
• the feeling that I will imminently die
• a migraine which continually increases until I can calm down and think about anything else
• an overwhelming sense of dread
• the lack of desire to persevere

These feelings are so terrible, that I wish to no longer experience them ever again.  I know that I cannot avoid these feelings in the future which makes the whole experience worse.  Previously, the response has not been that extreme but now it appears that this is what I have to look forward to anytime it is brought up.  All last week, each day, that is what I experienced.  I am experiencing it now just writing about it and I am not even thinking about the specifics of what happened.

I know I need to continue, to persevere, so that what happened to me is not done to others.  Knowing that does not change the fact that I want to leave.  Just go and never look back.  New state, new city, new life; just leave everything behind.  Never look back.

Paul Corby. Denied heart transplant.

This blog entry is a result of my reading about the decision made by Penn Medicine regarding Paul Corby. By the way, go sign the petition should you read the information from those links, other news sources, and/or the contents of this blog. [Which was written thanks to a blog by a friend which was the catalyst I needed to write this coherently.  You can find more about that post below the jump.]

When it came to the heart transplant of [specifically] Paul Corby he did deserve equal consideration.
Other than the heart defect, there was nothing apparent [or expressed] about his physical health that would make him ineligible. Yes, he is an adult with different issues [autism and both possibly-related/co-morbid mood disorder and possibly-related unknown medical reactions; exhibited inability to manage his own medications; and possible reactions between current and necessary medications [ie: imbalance between medications, not necessarily life-threatening].

What I see as the main arguments that are important to consider in regards to otherwise healthy individuals in similar situations:

1. Autism should not be viewed as a life-threatening "disease" that affects whether one can be on a transplant list.
2. Even though Paul is an adult and it would be unlikely that Paul could manage his medication, Paul is currently under care and would likely remain under care. Unless we are going to deny transplants to children [who also cannot manage their own medications] then we need to make sure that the inability to manage medications for someone under care due to circumstances that render the individual more like a child [not as in someone who otherwise would have the capacity but fails due to already-established criteria which I cannot recall currently] but otherwise contributes/engages in society. [Do not construe this as though I am saying anything to the effect that I wish to exclude mentally handicapped - I just have spent too long wording this part and wanted to emphasize that Paul has exhibited involvement in society as a whole and I need to end this before it becomes a blog entry on a blog entry.]
3. Yes: Paul is on other medications and there is concern as to how his person and his existing medication will react/be affected by adding the necessary medications [of which, the only one that was noted as a concern was the steroid] but the person managing his medications had reached out and was willing to be actively involved in managing/adjusting the other medications to find a balance that worked.

I think every citizen pending a decision to be placed on a transplant list deserves the equal privilege of consideration which I do not feel was given to Paul Corby.

I feel that the information provided demonstrates that [in the specific case of Paul Corby] the deciding physician did not consider that:

1. the autism and co-morbid conditions were not fatal, degenerative, nor significant/uncommon
2. Paul received care assistance in certain areas, similar to a minor child, and would have been able to maintain necessary medications
3. a different health-care provider, with experience in the specific area of Paul's medication therapy and needs, was going to step-up and be actively involved in managing any medication adjustments which would be necessary.

This is a rant, this is only a rant...

So, yea. I was working on stuff today and found a new blog I like and then read this post. [I want to qualify that this post reflects positively on how I feel toward the blog but horrifies me in regard to other people. The blogger did not really understand this one either.]

I did not verify this quote for 2 reasons, 1) I did not put any more effort than just typing "war on autism" into Google and solely looking at the first return and 2) I really do not want to end up on the website of the group that wrote this quote.

“Our children are soldiers in way as they too have sacrificed their lives for the “greater good”. Our kids have been sidelined by this misguided, illusionary war on disease. We must never let our country forget that our children too have paid an enormous price for our country.

“1 in 88 children now effected with autism and 1 in 54 boys in the US. The collateral damage done to American children during this generation will mean a shortage of soldiers, teachers, firefighters, policemen and women, doctors, nurses, engineers,and scientists. Just like the men who gave their lives for the greater good so have our children. OUR soldiers. OUR children. OUR future. Our Freedom. People need to start thinking in about how this crisis will impact our countries 10-15 years from now. The good of our nation is being threatened one child at a time. One day the effect will be felt.”

In case you may have gotten confused by the second paragraph [which states "Our kids have been sidelined by this misguided, illusionary war on disease."] and thought that this was stating that the war on the 'disease' is harming the ASD children [like I did at first] allow me to dissect paragraph two. [Also, if there is a saying regarding the difference between desert and dessert is that dessert has two S's because we would like to have second dessert, why did they not take the second S out of dissect?]

[but I digress - also two S's because I will have to do it again?] Paragraph Two:
'Many children, mostly boys, in the US have autism. This has caused "collateral damage" to American children and means that this generation will have a shortage of people [without autism and able to do worthy work?] to do essential jobs that only NT's can accomplish' ... Like being engineers and scientists?

I swear, does whoever wrote that have any understanding wtft autism [including the broader spectrum] causes as 'side effects' ??? Like, maybe, interests in math and science, ability to see pictures in our heads and evaluate structures, focus and perfectionism, logical problem-solving, and quick mental processing????

But, ya know, there will be a severe lack of social services, medical services, and advances in science and engineering because all these freaking kids went and got themselves all diagnosed with an Autism Spectrum Disorder.

Sorry to inconvenience the rest of you.  I was too busy 'giving my life away before the onslaught of autism - that I was too weak to fight - and now the rest of the country will parish.'

Autism Cure Research - Session 2

So I've been collecting lots of links and reading many articles, but I was struggling on where to start this next entry.  Until I remembered one of the most-profound things I ran across while researching.

I've read [and seen first-hand] several accounts of people wanting their children with autism cured.  When I try and talk to them about how I feel about it, I end up getting flack because I'm "not as bad-off" as their kid.  It is true, I have less-obvious deficits and I am able to be verbal in social situations [though not always in stressful ones].  However, I had a feeling that even autistic individuals who had more-severe deficits likely felt the same way I did [at the basis of this is a different 'wiring' in our brains and we tend to be very logical] and so I recalled something I had read regarding Amy Sequenzia: 

 [click image for link to interview]

Through reading Amy's work [and there are several others through ollibean] I felt that this was confirmed.  While I can understand the pain of not feeling like you're meeting the needs of a loved one [that one truly is both ways] may be it will help to read the words that someone very-similar to your loved one is expressing.  Everybody has unfilled needs.  Even NT kids have issues with bullies and making friends or not fitting in with the crowd or the cool kids.  Everybody wants something which is unobtainable [and if everything is always obtainable I would like my centaur-boyfriend promptly delivered!].  Everybody should also want things that are just out of their reach for it is that want/desire that challenges us to grow.  The giraffe was not born with a tremendously long neck, that neck was earned.  I was not handed the innate ability to automatically decipher the social ques around me, but I strive a little harder each day to learn more.

Once you get into this whole argument over whether I'd like some things to be easier or whether I take or took medication at some point it is almost as though no one understands that some of what makes my life harder also makes it my life.  Yes, I get overstimulated and sometimes I cannot cope with that.  But at the same time, my entire outlook on life is so different.  I would never dream of giving up my intellect, my thought-processing speed, my ability to see things from multiple angles, the gift of being able to look at something without emotional attachment, my amazing problem solving skills [which do get noticed], the fact that bad memories tend to fade [or if I have a bad experience, I cannot remember the person's face who gave me that experience and so I don't treat them any different the next time], my naive and open outlook on life [I always expect the best of everyone], and the list goes on and on.  Those things make me who I am.

Now, I did promise some research in this thing so let's see if we can get more than just 1 external link...
First, I want to start with "'non-verbal" autism by directing to an about.com article.  Summary: "non-verbal" autism could mean that a person is physically unable to orally speak or that the person is unable to use spoken language effectively/cohesively/etc.  Those people may [and several do] have the ability to speak but may do it through written work, picture cards, sign language, etc. 

I really intended to go more deeply into research and cures, but the farther I dig, the more upset I get.  I have to once again rely on MamaBeGood [because I really do not need to reinvent the wheel] for her awesome words.  I think the root of all this "cure" nonsense is the way in which the narrative about autism is expressed.  NT parents, caregivers, etc. hash and vent all the terrible things and there is not much focus on the positive things.  NT's frustrate the biggeldy-puck out of me yet I don't think they should be cured.  I've gotten into an argument about acceptance and that since I'm part of a minority [which is supposedly increasing, though I do not fully believe that] I should have to adjust instead of a greater population learning about me.  That is completely against the social narrative of this country in which I live.  There are far less people in wheel chairs, should we remove the wheelchair access ramps?  No.  We all deal with access ramps because of that portion of the population that relies on them.  How many times have you used the handicap door button? [directed to those of you who do not have a necessity for this item]  Did it not make your life easier when you were trying to get into a building while carrying items?  Maybe if you can adjust to take ASD's into consideration you may also find parts of your life get easier.  We really do have things to contribute if you give us a chance.  We're not smallpox that needs to be eradicated.

I honestly meant this to be far more "social discourse-y" but it actually ended up rant-y and it's almost 2am [which is my bedtime].

Just plain freaking angry...

Okay, so I acknowledge that I started this blog so that I could deal with a variety of issues (including those caused by the abuse/neglect/ignorance of my family)... However, after I had started, I thought maybe I would try not to do exactly what I'm about to do...  *WARNING* This is about to get negative and ugly...

(and so, I may have just secured the interest of 50% more people... lol)

Tweets too short for this discussion...

I guess "enough" depends on the type of treatment... but in my experience, people (even loving, caring, parents who "researched") don't understand what they're "curing."  Is the treatment temporary (stop doing/taking X and the effect stops) or invasive/permanent (I don't have a good example... are you going to operate on my brain?)?

Some 'behaviors' that are 'cured' aren't really cured, they just give the person with ASD more stuff to have to deal with.... in a world that can already be overwhelming.  Instead of letting us cope and finding ways to effectively let us manage symptoms/input/etc. from what I've seen people want us to be more "normal" (and I'm not alone in that opinion).

Did somebody understand the actual problem they were trying to fix??  Or is it going to be another instance where they taught someone with ASD to maintain eye contact - regardless of whether they could effectively communicate while making eye contact?  If all you want is "normal" then, I'm sorry, but you need to get off my planet.  I cannot always look you in the eye and make cohesive conversation - there's too much to process.  All you did was make an NT feel better.

And yes, we do get a little defensive when you want to "cure" us... How about we cure you.  One day if there are more ASD's than NT's, want us to try and find ways to change how you interact with the world in ways which might keep you from being able to interact?  This is what I mean about more information.  The treatments I've seen where they "fix" a behavior, they didn't address the reason why the behavior occurred, only took it away and replaced it with nothing else.

Did somebody consult ASD's regarding the therapy (in regards to behavior therapy, possibly medication) to understand why the behavior existed and, if modified, what would need to replace the behavior or make the behavior less distracting?  Are the people who developed the therapy and who are praising the potential outcome all NT's?

Twitter conversation below the jump.

(and I included the "medical acceptability" part at the bottom even though I want to talk more about that too... I just can't right now.)  Or maybe I can a little... Medication reacts very strangely with ASD's... I already didn't think they did proper testing on drugs (samples never include alternate groups such as elderly, overweight, groups with other medical conditions) and so 'wackadoo' stuff ends up happening to people in those groups.  Even drugs that are "tested" and "safe" end up with recalls, killing people, or causing huge problems later...